Saturday, October 9, 2010

DE Area MS Chat was NOT Disappointing! SUMMARY

Thanks to the eleven chatters who tore their attention away from the political ads on TV to chat about MS and disappointment.  We had three new people join, and we were happy to welcome them.
As promised, here are highlights from Friday night's chat:
Disappointment manifests as guilt, anger, self-pity, blame, sadness, etc. These are tough emotions, and I highly recommend a book called:

“MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis" by Allison Shadday LCSW
You can find this on Amazon or at Hunter House

In Delaware, you can call the National MS Society at 302-655-5610 if you want to speak to a counselor to help you with your emotions.  Or you can use the Delaware help line at 800-464-4357 to get confidential referrals.

We discussed two types of disappointment:
1) When we are personally disappointed by the things life hands us and
2) when we disappoint others.

I shared three tips when YOU are personally disappointed. They are:

TIP #1: Allow yourself to feel your emotions (don’t beat yourself up), then create a new plan.

TIP #2: Prioritize – disappointment will still be there, but you’ll be able to deal with it knowing that you are doing what’s important and best for YOU.

TIP #3: Accept Reality

The best advice I've seen, but just keep forgetting, is "Accept the Disappointment and then Move On." Arrgghh! That's tough to do, and I allow myself time to wallow in self pity, then I have a piece of chocolate and set some new (easier) goals. But it really is good advice. I get into trouble when I deny reality and tell myself that I’m healthy (hey, I look great!) and energetic and clear minded.

NO, I’m NOT giving up. I’m accepting and regrouping.
Acceptance is NOT quitting! Denial just takes too much energy.
Accepting means seeing what is true and taking responsibility for it.

One chatter ("Sister Susan" a licensed psychologist) suggested that we use a JOURNAL to keep these tips handy and reflect on our success in dealing with disappointment.

She also said:
"The bottom line is that life can be very disappointing in many different ways, the goal is to learn to acknowledge the pain & tolerate the feeling. If you can feel the pain, it begins to heal a little. Tolerate the pain without distractions for a while, as it diminishes it is then OK to distract." Grieve and heal.

She recommends a guided imagery CD from Belleruth Naparstak called "A Meditation to Help You with Multiple Sclerosis, which can be found at

We also touched on disappointing others. I shared a negotiating technique from my life coach called

If someone asks you to do something and you can't, you can figure out ways to make the task easier (better it), negotiate to do something differently (barter it), or decide not to do it at all (bag it). 

I confessed that after trying my best to negotiate and be considerate, I will wash my hands of responsibility if they choose to be offended, hurt, or disappointed.  If I have communicated, stayed true to my priorities, and tried negotiating, then how they feel inside is their choice.  It is not my business to tell someone how to feel.  It is THEIR choice and I don't feel bad if they feel disappointed. 

That may sound hard-hearted, but my PRIORITY is to manage my energy, and dealing with whining people is not a good use of my energy.  My recommendation is to BE POPEYE: I am who I am (I yam who I yam) with no excuses.   I can't worry about how someone else feels; I can be sure not to hurt someone intentionally, but I YAM WHAT I YAM, and what I yam is a person with low energy.

Christina shared a poem with us that I'm reprinting here with her permission:

A Poem About My MS

You’re taking over my life
You’re cutting through like a knife
I want to get control again so the
things I want won't end.

You cause me so much pain
and depression it's like I'm
supposed to learn some lesson.

A lesson about not taking things
for granted appreciate them the
way they are and not to let the
ones you love get too far.

Keep them near keep them dear
for they are the ones to wipe
away all your tears.You have to
stand up and be strong it will
soon all be gone.

Now don't be afraid don't run away
there will be a cure someday then all the pain
and depression will end forever
so what ever you do don't say NEVER!

By Me Christina Spiess 
Thanks to EVERYONE for sharing your stories of disappointment. Thanks for the honesty and the open hearts. I learned a lot from you.

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